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New to the forum - Carers UK Forum

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Hello,

I’m Rebecca and new to the forum.

I currently care for my husband who after experiencing acute pancreatitis last year, has been left with a number of physical health issues. He has recently been discharged from hospital after having surgery to hopefully alleviate some of his symptoms.

My 89 year old Father also lives locally. Fortunately, he continues to live independently at present, but as an only child, I am responsible for some aspects of his care (mainly practical tasks). That said, he is a very proud man & does not like asking for help!

I currently work full-time in an emotionally demanding job & am finding it all a bit much. I would welcome any advice from anyone who has negotiated this tough path of balancing work with caring. I asked to go part-time - unfortunately, I cannot reduce the days that I work, but may be able to work slightly shorter days (the final decision is made by a panel & is in no way certain). We have a private package of care in place Monday to Friday at present for my husband, but neither of us is entirely happy with the level of care provided.

I am seriously considering taking a break from work to become a carer. Any information / experiences shared would be welcome.
I'd ask for all the care help you can get from the local authorities before quitting work to be a carer. You'lll see from the various posts here that caring can be all consuming, highly demanding, isolating, demoralizing and thankless!
Hi Rebecca,
I juggle work and caring. S has autism and other health needs. We have a mixture of agency support, he attends a college follow- on day service and we have a few hours direct payments to cover his care. He cannot be left alone nor be cared for by people who aren't familiar with his needs. My priority order for dealing with things is first S, then work ( very demanding job,) then me and then the house. So my house is rather untidy and I battle against the clutter.

I try to make things at home as easy as possible - I pay someone to clean a couple of hours a week, I iron as little as possible and recently invested in a dishwasher.

Caring full time alleviates the stress from juggling but can bring different stresses - financial, isolation, loneliness, lack of purpose, spending too much time with caree. This doesn't do the caree any good either.

I went from full time to part time and now work 4 days a week, ( though they manage to squeeze 5 days of work out of me!) it's a shame your workplace will not allow this. Some jobs allow people to partly work from home, not an option in my job, but maybe in yours? Shorter days might help. Perhaps it's time to look around for something less demanding/ part time or whatever. It's easier to move from job to job than to return to work after a period of caring. Would your work allow you to take a year's unpaid leave, do you can try it?

I would explore all your options before totally giving up work to care.

Melly1

PS there is info on the Carer Uk main website about working and caring.
Hello Melly,

Thank you for your reply. I am sorry to hear of your own struggles.

Unfortunately, I am unable to work from home due to the nature of my job (confidentiality issues mainly). My workplace are not willing to budge on dropping my days - we are only a small team & two staff members (both mothers) have already dropped their days. As you say, I think it is time to look for an alternative job.

I can quite imagine that working part-time can mean putting full time hours in (I worked a 4 day week in my previous job) & I feel for you.

I’m from an NHS background but swapped jobs last year - unfortunately I haven’t been in post long enough in my current job to request things such as a career break /longer period of unpaid leave. To date, the vast majority of my annual leave has been used for hospital appointments to support my husband - I have also taken some unpaid leave short-term, to enable us to have a week off, something that was much needed.

It is really helpful to hear how you juggle day to day. The idea of a cleaner is very appealing, I must say! Anything to alleviate some of the pressure.

Thank you for mentioning the caring/working link on the website - I’ll take a look.

I really appreciate you taking the time to respond.

All the best, Rebecca
I would say the first question to ask you is this - is your husband's health going to improve to the point that he needs no, or hugely less, care? If so, then over what time period?

Is he currently able to work, and if not, will he ever be again, do you think?

The second question is, looking at your father, what do you think the 'long term' (let's say next five years) are likely to bring?

In some ways the answer is 'obvious' - he's inevitably going to get frailer and weaker. However, that may be 'gradual' or it could be 'sudden', and it could 'speed up'.

Very often on this forum we hear of elderly parents who seem to be tottering along 'not too badly all things considering' and then, often out of the blue, there is some form of health crisis (eg, they fall, they get bad flu, etc), and then they deterioriate rapidly. It's very common for us to see that followed by hospitallisation and thereafter things can never 'go back to the way they were'.

As well as physical health, the KEY factor for his future is going to be his mental health. With my MIL, she reached the grand old age of 89, living on her own in her flat, quite independently, 400 miles away from me. Then, in the space of a few weeks, she decided she couldn't face another Scottish winter on her own (understandably!). My first thought was simply to move her south into an equivalent flat near me, so I could 'look in on her' regularly, and be 'on hand' etc.

But in fact the real problem was that dementia was setting in - the slight 'vagueness' noticeable beforehand turned into total mental infirmity, and within five months she had to have residential care (or I'd have had to stop my entire life to look after her in my own house).

So, sadly, however independent and 'capable' your dad seems now - and all credit to him - that could change, far more rapidly and drastically than you think (and hope).

The question that then follows on is to look at his finances (HIS, in the first instance). Does he own his own flat/house, does he have savings over £23,500? That is the trigger point for whether he qualifies for any 'free care', ie, carers coming in to help,, or, if he is not a homeowner, 'free' residential care. It's a brutal cut off!

So, I would say, before you take any decision about whether to give up work or not, please sit down with your husband and really go through all this with him.

Sadly, as you are already seeing, there are NO easy decisions, and whatever you decide will have a definite 'downside'. It's not a question of making a 'good' decision, only 'bad' or 'worse'.....in terms of the impact on your life.
As you are an only child, you will in due course inherit dad's assets.
Does he own his house? Have over £23,000 in savings?
Do you own your house?
If dad owns his house and needs residential care, the value of the house will be used to pay for his care, and at this stage, there is very little you can do about it.

It would be much better for dad to use his savings and/or some of the value of his house, by way of equity release, to pay you and take all the pressure off you. Does he know that you are struggling? \if dad is 89, how old are you, and how far from retiring?
Hi Rebecca,
Glad I may have been of help. It seems rather unfair that the other two managed to go part time, but that means you can't. Would a job share be an option? Might mean going down to three days instead of four.

Here's the link to the info I mentioned https://www.carersuk.org/help-and-advic ... and-career

Melly1
Hi Rebecca
As well as the financial and practical issues in taking a career 'break' you will find it very difficult to get back into work after, and certainly very difficult at the same level. Yes employers are supposed to make things easy for carers yet they don't . They don't see caring as having any skills and see people who have taken a break as 'disloyal' ' not focussed or dedicated'. It just doesnt read well on a cv.
Sorry if this sound brutal but it is just reality, so do think very hard as a 'break for caring' may well severely damage your employabiltiy and earnings forever. Its not just a matter of taking a few months out. Caring is socially isolating, we often forget the social side of work and the intrinsic values of feeling worthwhile.
I'm not saying don't do it, that is a very personal decision but you do need to consider the harsh realities among the rosey tinted "I can do this for a few months" and the longer term financial, selfworth and loss of status issues

My usual advice is to try to become 'care manager 'rather than main 'care giver'

Kr
MrsA
Thank you all for your responses. Just to try & answer the questions asked.

No, my husband is not back at work & I am unsure at this stage if he will return to work. Even if he recovers sufficiently physically, he still struggles with concentration, mental stamina etc making it difficult to do his particular job.

My father owns his house & I own mine. I don’t presume to inherit any “assets” - my father got into terrible debt a few years ago (a woman was involved, I contacted the police - long story) & to this day, I am unclear about the level of debt he has. He would certainly be below the savings threshold that has been mentioned.

I am 45, so a long way from retiring.

I have proposed the idea of a job share at work - this was turned down, unfortunately.

“Care Manager” rather than Care Giver - this sounds like a positive, practical way forward Mrs A.
So, it could be that your husband will be out of the workforce for the rest of his working life, barring a dramatic improvement in his health.

How much actual 'hands on' care does he need from you? I take it he can 'get by' during the day, while you are at work.

Which do you think is the more stressful for you - your husband or your father? Who would you prefer NOT to be 'on your watch' if you had a choice? Sometimes trying to see where the 'core stress' is coming from, can help target your response to it.

The trouble is, as others are saying, it is SO tempting to 'free up your time' by giving up work, but that DOES spell danger down the road. It could be a decision that has no reverse gear on it....

Would CHANGING jobs be an option? For something that is less emotionally draining on you, but still gives you the income and career progression that you would not want to lose at a time when you are at your 'peak skill and experience'.